CLIPPERS: Looking to connect with others

@liztbnr I know you want to control/manage this yourself, but i really encourage you to have someone with you. My husband went with me and he heard things differently than I did. But, I won’t tell you what to do! Just be prepared!

I think husband is undecided. I may have to search for another gp, anyway, if mine does not want anything to do with clippers.

@liztbnr if a rheumatologist or neurologist decide whatever the disease is, they will handle treatment. You GP will monitor your everyday health. I see my GP once or twice a year for things like sore throat, etc.
I’m really proud of you for taking the initiative for finding a doctor and just moving ahead!

I just want to have a bit of myself back so that I irritate hubby less. He can be snippy, I know I am slower in body and mind. I irritate myself no end. liz

Hi, I want to share my journey with CLIPPERS, as it is again different from what I read above.

I was diagnosed with multiple sclerosis (MS) 2 years ago (2021) after having had double vision (diplopia) for almost a year. Unfortunately the ophthalmologist had no idea to link the diplopia to MS, so I have permanent eye sight loss at distances of 5 meters plus. That meant I could not drive, but luckily I got suitable glasses a year after diagnosis and can drive again.

My only symptom was the diplopia, so the neurologist was rather unsure of the MS diagnosis, which was discussed with me and I agreed with. I had another 'attack' of double vision in August 2021, which was diagnosed as optic neuritis. It which was treated successfully with high doses of cortisone. I had no further attacks, and had no indications of MS after extensive tests in September 2022. I decided to live as if I did not have MS.

I had an 'attack' again in January this year, was treated successfully with high doses of cortisone, and assumed it was optic neuritis again. I had to visit another neurologist and he diagnosed me with CLIPPERS.

I am now on methotrexate, 2.5mg 4 times a week, along with folic acid daily (methotrexate may deplete one's folic acid). I am monitored through blood tests (liver, kidney, etc.). The neurologist do not want to put me on long term cortisone as there are too many side effects.

As I understand, there are less than 1000 cases in the USA. My neurologist has 3 patients, I am the fourth. He says that many neurologists do not know about CLIPPERS.

My neurologist said that he cannot give me a prognosis as there is little reliable scientific research about the illness (it has only been described in 2010 by Pittock et al). I have read about the illness and have a number of article references about it. If someone is interested, you are welcome to contact me.

Kind regards.
Ria Nel

@menel Welcome to the Clippers group! My clippers was first thought to be MS, but I told the doctor that I was too old. It can look similar on MRIs. And you found a neurologist who has other clippers patients! That’s amazing! What part of the country are you in? I think I’m the only Clippers patient in the mountain west.
You probably saw that everyone in this group had different symptoms and some had the diagnosis changed.
I’m so glad you found this group and hope you’ll stay in touch! Will you? Becky

Hi Becky, thanks so much for your prompt reply! I was diagnosed at 62 with MS - rather 'old' for MS onset.

I am from South Africa and I am very lucky to have come across this new neurologist. After having told him my story, he initially agreed with the MS diagnosis. However, when he looked at my brain MRI, he diagnosed CLIPPERS and showed me how the pons region is affected.

I will definitely stay in touch, and will read all the other stories and comments. I have found the ones that I read so far very useful, as I do not know anyone with CLIPPERS.

Thanks for the good work - it is highly appreciated!

Hi, my diagnosis was made through the following:
1. Double vision (diplopia), which was my only symptom.
2. Brain MRI which indicated lesions on the pons of the brain.
3. Two lumbar punches, 6 months apart, through which cerebral spinal fluid (CSF) were extracted. The first CSF contained oligoclonal bands (OCBs) (but not in the serum = blood), while the second did not contain OCBs at all. When I asked my neurologist about this he said that the OCBs, although not present in the second CSF sample, was still an indicator of CLIPPERS.
4. I had lots of other tests, including blood tests, a 12-hour EEG, etc. which indicated all was well.

Here are two articles about CLIPPERS:
https://pubmed.ncbi.nlm.nih.gov/24028073/ This is an abstract of an older article and was shown to me by my neurologist. There is a full version, but it is very technical and should be read by a medical specialist.

https://pubmed.ncbi.nlm.nih.gov/36930124/ This article is again very technical, but I found the prognosis and discussion at the end of the quite understandable.

I hope this info benefits someone.

My husband is 65 yrs old. He started seeing double and in less than a week he was not able to talk plain, nor walk. We took him to MD Anderson Cancer Center in Houston because he had previously had cancer and had a stem cell transplant almost 12 yrs ago with no problems. We had the stem cell department, the optomology department , the neurology department all trying to figure out what this was. He had inflamation on top of his brain and midway in his spine. He was in the hospital for 54 days. They ran hundreds of test and sent stuff to Mayo Clinic also trying to diagnose what was wrong. MDA felt for sure it was a reoccurance of cancer and tried to prove it but all test which were 6 MRI's on his brain and spine and 6 spinal taps proved it not to be.. About 40 days into this the neurology department came up with Clippers however the other departments were not so sure but they treated him for it anyway. They started him out with Foscarnate, then went into steroids 100%. He started seeing improvements. This happened on March 11, 2023. He was dismissed from the hospital on May 5th. He is being tapered off of them and is now down to 50%. He takes them for 7 days then reduces down 10%. He should be off around the 1st of July. He has also had 2 treatments of Rituximab and 2 treatment of antibodies. When this happened it affected his speech, his saliva glands, his vision, his hearing, his motor skills, he had and still has what we call tremors that will shut down his speech to sounding like a slow motion warped record that is hard to understand. This also affects him moving his legs and involuntary hand movements. He walks with a walker and has had rehab to help with that. Has anyone else had these symptoms? How much of your life back did you recover? I have so many questions. MD Anderson called him the mystery man and had only seen one case of clippers and they didn't diagnose that. It was a female that came and took her 2nd dose of Rituximab there. I think they are really just guessing. I would like to talk to someone that has been there and recovered and know who did you see?

Ria Nel, what part of the country are you in? I am in Houston area. I would be willing to take my husband for a consult to a doctor somewhere else if they had expierence in Clippers. My husband was diagnosed at MD Anderson Cancer Center in Houston and they are totally unfamilar with Clippers.

Jimbontexas